16 Young People With Tourette Syndrome Share What They Want You To Know

By Mike Spohr

1. “I wish people knew that staring at me when I am ticcing makes me feel much worse than just asking me what I’m doing.”

Mary Kathryn Larson

“I feel pretty comfortable explaining my condition. I wish people knew that I am not embarrassed about having Tourette, but am proud to share my story.”

—Mary Kathryn Larson, 17, from Westlake Village, California

2. “I wish people knew that only about 10% of those with Tourette’s have coprolalia (uncontrollable swearing).”

Gavin Austin

—Gavin Austin,18, from Albuquerque, New Mexico

3. “There really isn’t a way to just make the tics go away.”

Katrina Bergeon

“There are different medications and types of therapy, but what works for one person may not work for another. Unfortunately, at this point in time, there is no cure that can help everyone’s tics.”

—Katrina Bergeon, 16, from Litchfield, New Hampshire

4. “Tics hurt.”

Tyler Childers

“I play hockey, so I know pain. Sometimes the pain of repeatedly straining the same muscles for a tic pushes me over the edge. When I say I am tired or grumpy or in pain it’s not an excuse or an exaggeration.”

—Tyler Childers, 13, from Billings, Montana

5. “Having Tourette syndrome does not define my identity.”

Zoe Kaplan

“Rather, it adds to the multitude of characteristics that make me who I am. I have a bachelor’s degree, I have blue eyes, I am passionate about gender studies, I play ultimate Frisbee and I have tics.”

—Zoe Kaplan, 21, from Middletown, Connecticut

6. “Tourette makes me nervous in certain social situations.”

Bailey McIntyre

“At the movie theater, I have this feeling that I’ll be shouted at for repetitively disrupting the family film. In class, I always freak out that my tics will cause the other kids to scold me and glare at me. I have come to accept my Tourette and I just hope that other people will come to accept it also.”

—Bailey McIntyre, 16, from Gainesville, Florida

7. “Vocal tics may be the more noticeable symptom of Tourette syndrome, but they’re merely the tip of the iceberg.”

Charles Griebell

“My motor tics are much more uncomfortable, yet they are less obvious. They are the ‘unseen’ part of the iceberg. I want there to be more education and awareness so kids will feel relieved once they know that tics like eye rolling or stomach tensing aren’t symptoms of a life-threatening disease.”

—Charles Griebell, 16, from Princeton, New Jersey

8. “I wish people understood that I have to tic.”

Gardner Thor

—Gardner Thor, 14, from New York City

9. “I want teachers and students to know what people with Tourette go through every day.”

Olivia Woodrich

“I used to be ashamed of having Tourette and tried to hide my tics, especially in school. I would concentrate so hard on trying to suppress my tics that I couldn’t focus on my schoolwork. Not only did this result in bad grades, but others thought I was a bad student who didn’t try, when the opposite was true.

“Things only turned around when I got teachers who were trained in understanding Tourette. I no longer try to hide my tics and am thankful for all I have been through, even the bullying, because it made me the person I am today.”

—Olivia Woodrich, 17, from Broken Arrow, Oklahoma

10. “Tourette is not autism.”

Jack Shink

“Sometimes people confuse Tourette with autism even though the two are very different. I think the reason they do that is because there is more awareness about autism and other disabilities.

“I wish people knew more about what causes Tourette and how we can cure it, so kids don’t have bodies they can’t control or say things they do not mean.”

—Jack Shink, 15, from Wayzata, Minnesota

11. “When you ask me to stop my tics, it only makes them worse.”

Tempest Allred

“I can’t control my tics; not what they are, when they happen, or how loud they are. My tics change all the time. There is no limit to how many tics I can have.”

—Tempest Allred, 14, from Spanish Fork, Utah

12. “I’m more comfortable when others don’t acknowledge my tics.”

Hayley Gripp

“When I’m around people who know that I yell out the word ‘Chimpanzee’ or that I have a ‘Meow’ tic, their jokes actually intensify and multiply the tics. For a long time, I joked along with them, but inside I so badly wanted to yell, ‘Enough already!’ The only thing that kept my mouth shut was the fear of being labeled as having a victim mentality. After speaking with a close friend, she inspired me to speak up. I’m no longer afraid, and I share this experience in the hope that others with Tourette syndrome will overcome their fear as well.”

—Hayley Gripp, 22, from Los Angeles, California

13. “I wish people knew that asking someone with Tourette to ‘try’ to suppress their tics is like asking someone without Tourette to ‘try’ not to blink.”

Adam Fishbein

—Adam Fishbein, 18, from Elkins Park, Pennsylvania

14. “It’s hard to have Tourette.”

Willow Daly-Griffen

“Ticcing frequently makes it take longer to focus on schoolwork. Other students don’t understand the ticcing. They think it’s fake and can’t understand that I can’t stop it. It’s not easy and the tics aren’t the hardest part anymore. The hardest part is having OCD and anxiety on top of Tourette that makes me worry about everything.”

—Willow Daly-Griffen, 12, from South Dayton, New York

It is common for people with Tourette syndrome to be affected by another co-occurring condition. Some co-occurring conditions are attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive Disorder (OCD).

“If everyone knew about Tourette, I wouldn’t get as many stares and angry looks in public. I wouldn’t constantly have to apologize for something I can’t control. I wouldn’t have to explain myself every time I meet new people. I wouldn’t have to deal with people who think that Tourette isn’t real or that I’m faking it to get attention.”

—Lucy Wolf, 16, from Harker Heights, Texas

16. “Although Tourette has given me many challenges, I wouldn’t change my life.”

Jack Varanelli

“I have friends, get good grades, and play sports. Tourette may be part of who I am, but it’s not the most important part.”